2 YEARS OLD!

Happy Birthday Tyler! His 2 year birthday was last Sunday and it was a great day. He was finally starting to feel better from the virus he had since the surgery. This thing wiped both kids out for over a week. Both kids are now healthy and running around happily.

Tyler really is doing much better. I have high hopes that the MRI on June 1st will show that this shunt is finally working. He's acting like such a two year old, which is great. He's eating and drinking well for really the first time since January. I hope to see a lot of weight gain before his next GI appointment. We've been struggling for a long time to figure out why he isn't gaining weight. We still believe he has a milk and soy allergy, but we are now wondering if his shunt had been slightly malfunctioning enough to effect his appetite. The next couple of month will tell us. Over this ordeal, Tyler had developed a slight limp and a sluggish right side which has gone completely away. His balance is much better and that left eye is mostly back into alignment. This child has always been a talker, but wow it's continuous now. Usually he's telling me about a wagon or asking to play in my car. He loves to be outside. Over all the last week has been busy with activities and trying to get back into a normal routine. The hardest part is Tyler waking up a 5am for the day. And he's hungry (which is great!). He and Rachel share a room and Rachel does not do well at 5am. Never has. So we are all hoping that we can push out his morning bottle over the next couple of weeks to a reasonable time in the morning.

A wagon ride with a purpose.

The last couple of months have been very medically busy. I'd like to take a moment to let people know that Tyler will be walking in the March for Babies with Rachel, Ben and I on June 12th. More like enjoying his famed wagon ride around the hospital. Please take a minute to visit our sponsor page. Even a dollar will be a big help. Thank you!

http://www.marchforbabies.org/personal_page.asp?w=4081621&pp=3110310&ct=4&u=SharronBenRachelTyler&bt=2

Sick Kids

It's been busy here the last two days with sick kids. After 4 days of high fever, we brought Rachel back to the doctors. She has ear infections in both ears. Poor girl. With the antibiotic, she should start feeling better Tuesday or Wednesday. She actually slept better last night for me. Tyler still has a fever. Most likely the same virus Rachel started out with. Of course we have to watch him very closely so that he doesn't develop a post-op or post viral infection. But he wants to eat and drink so we still don't think this is shunt or operation related. He still has some reflux in the morning. We have to go easy for the first hour of what he can drink. The formula doesn't do well. He can eat Puffs and cereal first thing and doesn't bother him. So we are continuing to take it easy this week and keep things low key. The most exciting thing I'm doing is laundry.

We are home

We are home, Kids are in bed. Parents are going to crash now.

Still at DHMC

We are still here for a combination of things. Mainly because I believe the emergency room is very busy. DaRT has flown in 4 times today and just left for the 5th time. Usually not a good sign. His doctors just have been busy.

As for Tyler. He had a really good night. He had a really good early morning. Around 10am I started to notice him slowing down and getting very grumpy. Then, he was eating raisins and I thought one got caught in his throat. It resulted in a clean up. His neurosurgeon came in and said he looks good from a neurological point, let's just see how lunch goes. Well, Tyler didn't get to lunch. He's been begging for milk and water. We've been giving it to him. Shortly there after, he needed a bath and new bedding. Once we got him cleaned up, we noticed how hot he was. He's running a 100 degree temp. So we are waiting to see what happens next. I believe he has the bug his sister is also currently fighting. (It sounds like she's doing ok as long as the Motrin and Tylenol keeps coming.) The fact every hour he asks for milk, water, or a bagel in my mind is good. The past few weeks when he has bad days with vomiting, he wants nothing to do with food.

So Ben and I are trying to make the best of sitting on the Guantanamo Bay Furniture line with our 24 pound .

The resident just came in, maybe we will know something soon.

We are going to owe PICU a new rug.

Tyler has eaten dinner. Apple sauce, orange Jello, and playing with carrots. Then back to the wagon. He spent 2 hours just being pulled around happy as a clam nestled in some pillows (he was a little wobbly this afternoon). He's feed baby, played with the truck, read some books, and basically has eaten all afternoon in this wagon. Now he's pulling the wagon with all the above mentioned around the unit himself pitching a royal fit if we try to help him. And when the he's frustrated he runs to the door screaming "Out, Car, Bye-Bye". Just in case you are wondering which door, it's the one out of the unit itself.

His surgeon just came up and is amazed at how wonderful he looks. He's met all the discharge requirements save the last 2 doses of antibiotics he needs. So with any luck in the morning we can open that door for him. We are just letting him run around the unit to wear himself out so hopefully bedtime will be easy for him. We've got about another hour to hour and 1/2 to go.

Oh, the flirt has been turned on. He is a little cautious, but if he deems someone safe, it's all flirt.

He's up

Tyler is awake and asking for a wagon. Up next flirt-mode.

Resting..

Tyler has been awake, grumpy, and now back asleep on mom's shoulder. We could hear the cries of "Mommy Mommy" across the PICU when we came up to find him. So far he seems pretty in character for him. The Tylenol seems to be working so hopefully he'll have a nice nap.

Just spoke to the surgeon.

Just had a smiley meet with the surgeon. Tyler is doing great. The resident is finishing the dressing and in about 20 mins we should be able to see him.

The quick culture test came back negative. So it was a straight shunt revision. They moved the location of the shunt to a right front top location. So the cathider and and the valve were replaced despite seeing no malfunction when they moved the shunt location. They patched the old hole up with hopes that his body will naturally fill in with bone. Hopefully this will be the last of his shunt bump.

"Bye Bye, Night Night"

There is little question in either of our minds that Tyler knows exactly what's going on. He has not even asked for food or water all morning. He couldn't have any if he had. He is on high alert for needles and nurses. And when Sharron wheeled him out to the OR he said "Bye Bye, Night Night" to me. He may not know the details, but he knows what's coming.

Scheduling in advance has a few advantages. They will put him out with gas before putting in the IV. And they give us a pager-coaster like you get at Chili's when there is a long wait.

Sharron said he gave the requisite fight to the anesthesia and is off to sleep.

And now we wait... (we expect to hear something about 9:45 ET)

ugh! 0300

Up at 3 AM this morning, at DHMC by 6. This is a new experience for us, checking in at the desk for surgery. We usually get admitted direct from the Emergency Room. We are all checked in waiting for the nurse to call us to pre-op.

At the moment Tyler is snoozing on mom's shoulder.

More to come soon.

Trying out something new.

I'm sorry if this is short, but I need to finish getting things together and get some sleep.

Long story short, the MRI today showed Tyler's ventricles are not back to his baseline. Really they are just as big as they were 2 weeks ago when we had the last MRI. His head has also grown a full centimeter and the fontanel that was almost closed is rather big again. Tyler also has a bump underneath the incision that keeps getting bigger and is not soft and squishy anymore. In short his head is bigger than anyone one likes it to be. Add to this, he's still having bad days where he won't eat or drink and like today vomits inexplicably.

So for the new part. Instead of rushing him down to the emergency room to be admitted and on a pending list for unscheduled surgery, we went home tonight to pack a bag. Tomorrow at 4am we start a leisurely trip up to Lebanon for a 630am check in at a desk. WOW. I had to ask were this desk was. He will be in surgery around 730am.

The first thing they will do after he's asleep is tap the bump and get a quick culture. While the culture is doing it's thing they will finish prepping him. Once they get the quick culture back (about 30 mins, which is about the time it takes to clean his head properly for surgery) they will decide what needs to be done. If the culture is negative he gets a new shunt installed in a different place and the old hole will be packed shut so the bone can heal over. This option will get us home Saturday. If the culture is positive then they have to take all parts of the shunt out, install an external drain, and hit him with large doses of antibiotics. If it goes this way he'll be in the hospital a while.

We will update through out tomorrow. Once we know what is happening we will also give a better explanation as to what has been done. If this wasn't enough today, Rachel has a 103 degree temp and looks like she feels rotten despite her reassurances from the couch she is ok. But she is happy with her dog Zoey at Grandma and Grandpa's. It's funny, she told Grandma that Tyler would be in the hospital for a couple of days this morning before we knew it. Hmmmm.

Thought you'd like a few pictures.

Tyler has been having some good days and some not so good days. Here are a few pix from the last couple of good days. And really the bad days are nothing more than a grumpy child who isn't eating or sleeping well. We think he's uncomfortable from the bump on the back of his head. He'll often rub the bump while saying "Ouwie". GI was pleasantly surprise that he weighed the same this week as the he did 6 weeks ago despite everything that has happened to him in the month of April. We will see her again in 4 weeks and hope that he's gained a little weight. We go back to Lebanon on Thursday for a follow-up MRI and appointment with neurosurgery. We have a lot of questions. Maybe some can be answered.